1. Funded by Alzheimer’s Society Emma Ferguson-Coleman 1, Tanya Denmark 2, Alys Young 1, Bencie Woll 2, Jo Atkinson 2, Jane Marshall 3, Katherine Rogers 1, Ruth Geall 4, John Keady 1 and Alistair Burns 1 Study 1 (Deafness, Cognition and Language Research Centre) Establish the range of normal changes in language and thinking associated with healthy ageing in a population of Deaf signing older people. Develop a dementia assessment instrument in BSL that is culturally appropriate. There are no culturally appropriate assessments in BSL that are known to work well in assessing Deaf people who might have dementia. The Addenbrookes Cognitive Examination Revised (ACE-R) (Mioshi, Dawson et al. 2006) has been modified in addition to other language, memory and visiospatial tasks, so they are suitable for deaf BSL users. Items that need adapting: Verbal fluency looking at handshapes rather than English letters Remove English requirement, writing and repetition of complex words Pictures to be named due to iconicity of signs Name and address not culturally valid Clox administration-sign gives away clock face and hands In October 2010, 250 deaf healthy signers aged between 50-95 will be given these tasks at the England Deaf Derby and Joan holiday in Pontins, where over 800 deaf older adults will attend. With the collection of data from a number of different age ranges in deaf healthy adults, norms can be developed, so deaf individuals with dementia can be compared against healthy norms for their age and we can determine if they are at risk. DCAL, University College London, 49 Gordon Square, London WC1H 0PD, UK Email: dcal@ucl.ac.uk Tel: 020 7679 8679 Fax: 020 7679 8691 Minicom: 020 7679 8693 Social Research with Deaf People, Jean McFarlane Building, University of Manchester, Oxford Road, Manchester M13 9PL, UK Email: dwd@manchester.ac.uk Minicom: 0161 306 7751 Study 2 (The University of Manchester) Describe the experience of dementia from within the cultural perspective of signing Deaf people with dementia (DWD) and their carers. This is groundbreaking research in the Deaf community as this is the first time that Deaf BSL users have ever been interviewed directly about their dementia. These documented first-hand accounts are vital to find out: What BSL users’ priorities and values are in terms of care and support; The cultural influences on potential recognition of early-stage dementia; What daily life is like for a person, who uses BSL, with dementia; Deaf BSL users’ experiences with current service provision. Data will be collected from ten DWD and ten carers twice over a period of 6-8 weeks to measure (if any) differences in the participants’ experiences and access to information about their dementia. Video data will be analysed using Interpretative Phenomenological Analysis. (IPA) Study 3 (the University of Manchester, Alzheimer’s Society and Royal Association for Deaf People) Explore /knowledge of and attitudes towards dementia in the Deaf community including its identification, familial/community support, and service need and access to information. A review of current services available will take place; to identify accessibility and to gain feedback from the Deaf community about their preferences. Study 3 will incorporate a number of focus groups in the UK with Deaf BSL users who have no direct experience of dementia. These groups will explore what their knowledge and understanding of dementia is; and their perception of service provision in this area. The focus groups will also bring local Alzheimer’s Society groups, who have limited understanding of the support needs of Deaf people with dementia, together with Deaf BSL user groups. The study will look at the potential for inclusion and the development of joint working and support. These groups will be brought together by the Royal Association for Deaf People and the Alzheimer’s Society and the research developed by the University of Manchester. This feedback will be extremely useful for the development of future provision for Deaf people with dementia and their carers. British Sign Language (BSL) is a visual language used by more than 100,000 people in the UK. Lack of awareness of this linguistic minority creates barriers to diagnosis and support which result in health inequalities. Early identification, accessible information and ‘living well with dementia’ are key aims of the Government’s Dementia Strategy but these cannot be achieved for Deaf people without Deaf-centred research in BSL. A new research study, with three major elements, will assist with the early identification of dementia amongst Deaf people. This is a three year project funded by Alzheimer’s Society. The University of Manchester 1, Deafness, Cognition and Language Research Centre, University College London 2, City University London 3, The Royal Association for Deaf People 4